The truth about living with Rheumatoid Arthritis

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Rheumatoid Arthritis and Reiki

what does a rheumatoid arthritis flare feel like

Image source: http://www.anesthesia.org/images/pain3.jpg

I had my first ever Reiki session today. I had no idea what Reiki was all about, but I had heard the term.  As much as I knew is that it’s an alternative healing therapy.  Nothing more.  And I purposefully didn’t research, or google, or ask anyone about Reiki and what they thought.  I wanted to approach it with a completely open mind.

I’m not a cynic, nor even a skeptic, but I am evidence driven.  I don’t just hand over my faith and my money to anyone who says they can cure me.  I almost find the promise of a cure arrogant.  Severe Rheumatoid Arthritis is not a curable condition.

But I have seen many people turned around with diet, lifestyle changes, exercise, supplements, acupuncture…I have tried all of these myself.  Can these all have been ‘mild’ cases, or misdiagnosed?  Hard to believe.

This treatment was offered to me for free, asking nothing in return.  Such is my practitioner’s belief that he can help me.  I get miracle cures offered up to me all the time.  For the very fair price of $49.95, I can be pain free forever.  Yep. Right. Thank you…Delete!  But when someone is offering to help, and asks for nothing in return, I guess the only decent thing to do is accept with gratitude.

So I just had my first session.  A basic run down on Reiki is here.  It’s hard for me to do it justice, there is so much to learn and digest.  And some of it is hard to adopt.

Angelic Reiki, the form that my practitioner practises, is based on the Law of Attraction, that I have heard of to some degree.  In its simplest form, what you put out to the universe, the universe will send back to you.  Postivity begets positivity, negativity begets negativity.  I do subscribe to that idea, to a degree.

Another basic tenet of Reiki is that we are not here to suffer. We are here to be happy, and live a life that is fulfilling and enjoyable.  Very easy to subscribe to that philosophy. In fact much of what we discussed, I agree completely with. I just have a different terminology.

Another central tenet is that the body can heal itself. That all disease is curable.

I have a road block with this.  For the first many years of my disease, I was going to beat it.  I didn’t even accept that I had rheumatoid arthritis.  From the start of this blog, I envisioned the day that I would write that I am cured. I have beaten it.  I have won.

Over the years, my goal changed, and it became to live well, to live happily, in spite of being in pain.  I don’t always achieve that, but it is a philosophy that has served me well.  Most of the time I am happy.  I am always in pain.  I had to find a way for these to co-exist, or live a life of misery.

So now the goal is to visualise myself, not just happy living with pain, but being pain free.  And disease free.  And drug free. That this reality is within my control.

Misinterpreted, this philosophy can be turned to say that it’s our own fault we are sick.  I’m sure we’ve all been told that at some time. By a doctor, by a family member, by a friend.

But this isn’t the way it came across.  It came across as your attitude shapes your reality, including your physical body.  Which I believe…but I believe there are limits.  Reiki would say there are no such limits, and if I accept that there are no limits, my body will be healed.  I’m a long way from there.  I’m very much still focussing on living my life in the best way possible in spite of living with constant pain.

That’s the philosophy.  In practice it works like this:  In Angelic Reiki, your practitioner is a conduit.  He or she will facilitate the healing that the Angels endow.  So you need to have a connection with your practitioner.  The first session is the longest, and is all about building that connection.  You need to talk openly and honestly and establish trust.  Much more quickly that I would in any other setting!  Then the actual healing session takes place.

The room is cleansed, the archangels are present. There are candles and incense and soothing music and an environment of utter peace and calm.  I challenge anyone to not feel happier and less stressed under these conditions.

I was asked to lie on the table and clear my mind.  Focus on the music and whenever my mind wandered to bring it back to the music and empty my thoughts.  My practitioner laid his hands on my upper chest for the ‘soul’ and my abdomen for the ‘self’, and remained that way for the duration of the session. This is how he transmits the healing energy to me.

And here’s the paradox.  I felt such relaxation and tranquillity it was beautiful.  Emotionally I felt lifted, and cleansed.  But in the absence of all other stimuli, my pain levels increased dramatically.  Nothing else to focus on, nothing to take my mind off it.  Not allowed to mentally block the pain.

So while it calmed my mind, and gave me peace, it increased my pain levels exponentially.  Interesting.

I no longer panic when the pain is terrible.

I used to.  Fear makes pain worse.  Telling yourself it’s going to be unbearable absolutely guarantees that it’s going to be unbearable.  This is the Law of Attraction and Reiki, just under a different banner. I’ve always just called it a self- fulfilling prophecy.

So I can ride through the pain, although I wasn’t expecting to feel physically so much worse.

Contrasted with feeling emotionally so much better, it’s an unsettling experience indeed!  Confronting.

The session did unlock many of my core beliefs, and that I do see myself as ill.  If the mind does control the body, which there is much scientific study to support, then I will remain so. I understand this idea.  But I also cannot believe, at this time, that I can heal myself completely with the power of my mind.

But the idea of being cured, being pain free (drugs or no) is too seductive.  It’s what we all desperately want above all else.  Our lives back. To NOT be controlled by pain. TO have choice returned to us. To have freedom.  I admit I went to sleep fantasizing about it last night.

So I have committed to coming weekly for the next four weeks.  And then we’ll assess the treatment, and decide where to go next.  I am very grateful for the opportunity.

Right now I feel very relaxed. The drive home was torturous and I had to take double the pain killers when I got home.  The oxycodone has taken the edge off.  But mentally I am calm.

And I feel…happy.

Rheumatoid Arthritis, hair loss and biotin

Hair lossI guess things are going better, because I am starting to notice other things.  Things that are far more minor.  Things like my hair loss.

When you’re in excruciating pain, you don’t give a toss about being almost bald.  But when that pain fades a little, those smaller issues are able to come to the fore. The upside of this is I am clearly in less pain these days.

So now let’s deal with the hair loss!

It’s a very common symptom.  Whether it comes from the rheumatoid arthritis, the medications, or whether it is a sign of Lupus (which sometimes my rheumy thinks I have, and other times my rheumy things I don’t) I don’t know.

What I do know is I have about a third of the hair that I once had.  I am always trying to find ways to make it look thicker.  In the end I usually just whack it up in a pony tail, and hope no one notices how thin that pony tail really is.

When I started taking methotrexate  my hair loss accelerated. Then when I took Arava (leflunomide), it started coming out in great handfuls.  Personally I think Arava did the major damage.

But I have been off Arava for many weeks now, and my hair is still coming out in clumps.  It amazes me that I have any left at all, infact!   My shower is covered in clumps of hair.  I know.  EWWWW!

So I have been reading about biotin.  I’ve been taking it for a week.  And quite amazingly, no more hand fulls of hair in the shower anymore.  Still some hair fall, but much, much less.

It seems to be helping.

So what is biotin?

Biotin is a B-complex vitamin. It’s also known as vitamin B7 or Vitamin H. Biotin is present in the body naturally and it is essential for metabolic processing of carbohydrates, protein and fat.  Some say that biotin can help you lose weight as it helps your metabolism operate optimally…I don’t know if that’s true, but it sounds like a nice benefit!

The main reason people take biotin is to improve the thickness and quality of hair and strengthen their fingernails.  It can only assist if you are deficient in biotin, however.  The theory is that DMARDs like methotrexate and Arava deplete your B group vitamins, including biotin, and that causes the hair loss.

So what dose to take?

Recommendations vary from 300mcg per day to 5000 mcg per day.  I’m taking 1200mcg.  Start there and see how I go.

It’s an extremely safe supplement.  It has been studied in doses up toe 5000mg per day with no adverse effects noted.

It’s also very cheap, so not a lot to lose.  And as I said, it seems to be working. It could be co-incidence, but my hair loss has slowed.

So I would say if you’re losing your hair, give it a shot.  It might just help. And I believe if you look better, you feel better too.

Rheumatoid Arthritis and Diet – take two

The last two weeks have been incredibly busy.  I moved house.  I have spent the last week doing some unpacking. But there is several more weeks of unpacking to go.  The house is set up, basically. Enough to live here.

My RA has gone rapidly downhill over these last few weeks.  I have maxed out the prednisolone, maxed out the Arava.  Still taking Plaquenil and Naprosyn, although neither of those seems to be helping at all.

And I am still in full body mega flare mode.

All of these drugs should be controlling my pain and inflammation…but they aren’t.

Why?

Well, moving house is very stressful.  Then there is the emotional impact of the end of my marriage.  While we have been separated for 18 months, both of us actually buying separate houses and finalising things through the courts still hits hard.

Also, for the last few weeks, my diet has slipped badly.  I have been eating lots of processed convenience foods.  Lots of bread…a quick sandwich here and there.  Not enough vegetables.  Not enough fruit.  Lots of sweet coffee for energy.

And then there is the exercise.  I haven’t had time to go to the gym and do my usual Yoga/Pilates based class, my Pump class, my Spin classes.  Instead I have been packing boxes, unpacking boxes, lifting, bending, reaching… very hard on the body.  Not enough rest.

All of this means I have seized up shockingly.

While diet and exercise can’t cure my RA, NOT exercising and eating a poor diet definitely makes things worse!

So I am back on the diet bandwagon.

As of today, no more dairy and grains.   I am going back to juicing fruits and vegetables – my current favourite is carrot, apple and cucumber.  Lots of intense nutrition in freshly made juice.  Because I am in so much pain, I don’t have any appetite.  Juice lets me get vitamins and minerals into my body in an easy way.  It’s also got loads of calories, so I don’t really need to eat.  Except to take my meds.

I will do this for a few days, and then I will have to add more food. Some eggs, lean meat.

And I will keep researching…follow what others do, and hope it helps me.  I am willing to do anything.  Because I am really struggling to get through this pain right now.

I know I will. There isn’t really a choice.  I will always get through it.

So I would love to hear about anything that has helped others.  Diet changes, supplements, exercise whatever.  I will try them all.  And let you know if they help me too.

A clean diet is the start.  Then I will look more closely at ‘inflammatory’ foods. I have been reading some research about gut bacteria and the connection to autoimmune disease.  Lots to keep me busy.  Anything to take my mind off how my body is feeling.

So fire away, please comment here, and/or on the facebook page.  Thanks!

Rheumatoid Arthritis and Diet

This is a controversial topic.  So I will begin by saying there is no scientific evidence that diet has any effect on Rheumatoid Arthritis.

There is plenty of anecdotal evidence however, that some people find dietary changes make a huge difference to their symptoms.  There are also lots of people that say dietary changes make some difference. Then there are others that say it makes no difference at all.

I would also like to make the point that no one is saying Rheumatoid Arthritis is caused by a bad diet.  Once the disease is established eliminating various foods may help some people, it seems.

I eat a well balanced diet.  I eat very few processed foods, mostly fresh fruits and vegetables, some lean meats and the occasional chocolate bar when PMS hits.  In the past I changed my diet to being Vegan and gluten free.  It did help my symptoms for a while.  Then I re-introduced some animal products and decided that gluten was the main issue.  For two years I ate gluten free believing it was helping my symptoms.

Then one day I had a good, hard look at my pain chart.  And the truth was pretty clear.  It wasn’t helping much at all. I still flared as often, and as badly.  I was just making myself feel better by doing *something* proactive.

So I reintroduced some gluten and it made no difference.

Now that I have no other treatment options I am looking at diet again. It does help some people.  What have I got to lose?  Well, the sheer pleasure of eating something delicious.

I can deal with it.

So.  Research.

This is what I find.

There are many, many theories about what foods exacerbate Rheumatoid arthritis symptoms.  It would seem that everyone is indeed very different and it’s a matter of trial and error.  Eliminating foods and then re-introducing them to see if they cause a flare.

But how long before they cause symptoms?  Can’t be sure.  Some people say things like they eat dairy and within an hour they can feel it.  Some people say a day later.  Some say longer.

It is very hard to pin down cause and effect in these circumstances.  Which makes it very hard to give up foods you enjoy if you aren’t really sure.  A food intolerance is not like an allergy. It’s far more subtle and there is no medical test to prove or disprove it.

Anyway, from what I have been reading, these foods are the main culprits:

Gluten, Dairy, Sugar, meat, nightshade vegetables (potatoes, tomatoes, chillis, capsicum, eggplant) and lectins (beans, legumes, potatoes, peas, zucchini, asparagus, radish, mushrooms)

There are more, I’m sure.  But that’s a heck of a list of things to avoid already.  So I’ve done some more reading on specific diet plans that people state have helped their symptoms.

Most of these diets follow similar lines.  Being that I’ve already gone completely vegan and gluten free I’ve already done a diet more restrictive than most.

My acupuncturist recommends the Paleo Diet.  Looking into that, it seems there are many versions of that as well.  However, after weighing everything up, it seems like a reasonable eating plan.  It’s essentially no processed foods, lean meats, fruit and vegetables and nuts.  But it’s more restrictive than that.  When I compare it to the list of things to eliminate for RA, is not too bad a fit.  I can see why many people claim it helps.

I think a diet full of fresh fruit and vegetables sounds pretty good.  I eat mostly that, anyway.  The hard part will be cutting out sugar and my glass of red wine.  I will look into it more thoroughly in coming days, and give it a solid try.

It’s a 30 day plan.  It can’t make me feel worse, but it can substantially increase my workload and food bill, by the looks.  So I still have more reading to do to see if it’s doable.

But I think I will try it.  Properly. For 30 days.  Nothing to lose.

Rheumatoid Arthritis and acupuncture – methotrexate treatment?

Yesterday I had a session of acupuncture.  It was my third.  I wanted to wait until I’d had a few treatments before I started drawing conclusions.  So here goes.

It is helping.  But not the way I thought.  I’m not sure it’s doing anything for my pain.  But it is doing a lot for my mind.

If you’ve been reading the blog you know that the worst side effect I experience from methotrexate is depression and mood changes.

The acupuncture helps my mood.  After a session I feel less depressed.  My mind is clearer, more focussed.  I am able to think more clearly.

It is not a miracle cure – I still have some brain fog, and my moods still swing.  But it is an improvement.  An improvement that makes it definitely worth the purchase price.

I will continue for a few more weeks, and keep reporting my progress.  I am starting to become convinced that the methotrexate is helping my pain and inflammation…while slowly destroying my mind!  If the acupuncture can help me tolerate the methotrexate, then it’s a huge help.  Just not the way I thought it would be!

So what is acupuncture?

Acupuncture is a therapy based on Traditional Chinese Medicine.  The practitioner inserts and manipulates thin needles into acupuncture points in the skin.  Stimulating these points corrects imbalances in the patients qi (“chi”) through channels called “meridians”.

I have purposefully not gone looking for studies proving or disproving acupuncture.  I want to keep my mind open to test it for myself.

My acupuncturist is also a qualified Chinese medicine practitioner and a proponent of functional medicine.  He is highly trained, knowledgeable and has complete faith that he can get my symptoms under control; if not completely eradicate the inflammation in my body.

As I told him, I am not cynical as such…but cautious.  I have been promised many cures.  Initially my rheumatologist told me it would be a ‘long road’ maybe as long as two years but he assured me I would be in remission by my 39th birthday.  That didn’t happen.

I have since tried a naturopath that took a lot of money from me for a whole bunch of supplements that tasted terrible, and did nothing to help.

I have changed my diet radically.  I have always eaten a very clean diet,  so this wasn’t a very hard thing for me to do – rarely do I eat processed or takeaway foods.   I became a gluten free vegan, and it did make me feel better. But, with two young children and (at the time) a meat loving husband, it was impossible to maintain.  So I experimented and found that just being gluten free was key.

Over time, the gluten free either stopped working, or my disease progressed to the point where the benefit was no longer noticeable.  So I went back to clean eating.  Lots of fruit and veg, lean meats, occasional grains.  No processed foods. NO convenience foods.

This is very hard for someone with RA!  But I prepare my meals ahead mostly.  There is always something in the freezer that I can prepare defrost on my worst flare days.  I keep organic soups on hand for when I really can’t cook at all.  Then the kids get chicken nuggets and I get organic soup.

I should emphasize that while I was experimenting with diet and natural approaches I remained on my meds!  I think that everyone has the right to decide for themselves whether they should take meds or not.  Some of them are pretty heavy duty and come with a whole bag of risks and side effects.  My choice is to take them.  My choice is to also seek other therapies, in addition,  that may help.

I am open minded, but cautious.  I assess treatments carefully.  Results need to be measurable.  I have been promised cures before.  Some as simple as ‘follow this diet’ which for me is easy to try.  Some as repulsive as ‘buy this expensive program/supplement/book and you will be cured.’

So far nothing has helped.  I have lined a few charlatans’ pockets.  I have paid a few people who genuinely DID think they could help me, but couldn’t.

Acupuncture is certainly helping however.  My practitioner has also recommended many supplements and lots of reading.  The supplements are expensive.  I will need to research each one and see if they interact with my medications.  If I think there is any science to back them up.  I am not made of money.  And I’ll keep you posted!